How it was before:
- After each meal the stomach was becoming each time like a balloon ready to explode and someone had to take back some of the food from the stomach because otherwise if a gastric reflux happened my life was in serious danger (yes....because I can not swallow and so the food could go on the wrong way)
- I was losing weight and there seemed that nothing can be done about it
- I became weaker and weaker each day
- I stopped to ask anymore for food
- No more bloating
- I am definitely stronger
- I started to gain some weight (6.8kg)
- My face is happy again and is not in pain because my tummy is not hurting me anymore.
The new diet, called Amino Acid diet or AA diet improved the quality of life for many children that are fighting with this horrible disease - SMA, and it definitely improved mine too in such a short period. If we could only knew about it earlier, if we could only understand how to apply it earlier, if we could only afford to buy the Elemental Amino Acid based formula earlier...well I guess it is better late than "too late".
This helped and inspired us:
There are articles and testimonials from wonderful parents and doctors that worked to build this diet and that are applying it with good results, the information is out there shared for everyone and it can be a life saver for an SMA child. We where very much inspired and we are thankful for this to:
- Lizzy's Nina for her advices on how to proceed with the diet
- Stephanie and Tim Price for their help and advices and very helpful article about Amino Acid diet on their website
- Brad Fisher- Shira's father that made and share an incredible helpful movie about how to prepare the food following the AA diet guidelines.
- SMA Space - Great resource for inspiration, strength and help from and for SMA parents.